Payment for clinical trials

Wolflvr

alice124 said:

Health Reform
Don’t believe anyone disagrees with the necessity of health care reform. And I think this thread—while spouting many different opinions—reflects that need with a common denominator of frustration, growing frustration. It’s evident in people receiving and needing care, the hospitals and doctors providing care, and the taxpayers paying for care. We are all frustrated and lack confidence in our egotisical, greedy politicians who bicker like children while our country falters.

I hope the frustration will unite us--not divide us--and promote positive change. I'm sure no one intended to offend you.

Me?
I agree with everything you said, Alice. So sorry if I seemed offended, I'm not at all. Was simply adding my experiences and feelings about the subject to the others posted. It will take much more than a conversation about healthcare and politics to offend me, lol.

TX- Thank you.

Fox- I hope things work out for you. You've been through so much and I would have interpreted the trial terms the same way you did. It seems crazy to me, but then many things do.

alice124

foxhd said:

to keep this going
Thought I would mention that I was told that they would get back to me in a couple days. Haven't heard anything yet. Alice, thanks for the info you had given me. Sort of my Ace in the hole.

No News
I hope in your case - no news is good news, as long as the silence isn't accompanied with more bills. I continue to keep my eyes open for some type of uniform guidelines in regard to trials, but no luck thus far. Keep us posted on appeal. "Fox versus Yale" sounds kinda cool. ELF

Joe_fh

garym said:

Cynicism...
Speaking only from personal experience as an employer, and not wishing to start any arguments, I'll state the following. My cynicism comes from the fact that from inception in 2011 to full implementation in 2014 the so called "Affordable" Healthcare Act (aka Obama Care) will have doubled the premiums I pay to provide this already expensive benefit to my employees, and this is true for every employer I have talked to. This makes us less and less competitive in the world market place and only worsens the situation as the number of employed declines and the number of those in need increases. I have no axe to grind with the need for reform, but simply sticking it to those that are left paying taxes is not going to work IMHO.

counter-thought
... as a different way of looking at it ...

Have you considered that in the boxing ring of politics, AHCA was never supposed to work? IMHO it is a stepping stone toward a single payer system. It's my belief that as the full weight of AHCA bears down, it is by design a means to loosen resistance to creating a single payer system.

Historically speaking, the United States is fully vested in the "Employer supplied HC System". There was no way in the political arena to make the leap from A to C without first dabbling at a mid-point.

Who knows where we go from here, I only know (or think I know) that this is not the destination.

... just saying

alice124

foxhd said:

billing
I knew I could count on hearing from you Tex.
I signed the consent. Also signed by the trial nurse coordinator. She was the one who first informed me that BMS covered the MDX program. I had given her all my bills starting back in the spring when they first began to arrive. She said she would look into it as it was not correct. There were issues of my deductibles but I insisted there was no deductible if my insurance wasn't paying for it. That nurse has since left the hospital and follow up had been dropped so I started to directly contact the billing dept. which of course is off campus. Most phone calls have been left in voice mails. Others have resulted in being told that they are looking into it but they don't have all the information necessary. And that I am wrong and that the contract is ambiguous. I do pay for copayments for my visits but that is different. The contract is stamped and approved by the "Yale University Human Investigation Committee".
The bills started right off for my biopsies, scans, and even "chemo" as billing refers to my infusions. They obviously don't even have a proper billing code for infusions. I happily have paid for other services such as my skin biopsies and surgical procedures for removal of my skin cancers. None of which is related to the trial.
I have sent an email to BMS but they sent me a message saying, "thank you for your time to contact us. We do read all emails but due to an overwhelming amount of them we do not answer each one..Gee thanks.

Now the thing is that if I don't follow the protocol, then I can be dropped from the study. Therefore ALL requirements that I must meet are part of the protocol. That includes the biopsies, scans and keeping all my appointments and not skipping infusions. that means "The study drug(infusions),study-related procedures(biopsies, blood work and scans) and study visits will be provided to you at NO CHARGE to you or your insurance company. ?no?

Billing
Fox - John and I have been going through his trial paperwork and found two sheets that we had forgotten we had. Perhaps it's something you already have, but I'm unsure from your writeup. These two pages entitled, "Insurance and Research Participant Responsibility Information Sheet" spells out what the insurance/participant covers versus the trial sponsor (BMS). If you think it would be helpful to review, I've scanned it into my documents and will be happy to forward. However, you'll have to pm me your private email as I don't think we can attach to CSN messages. Just let me know.

foxhd

alice124 said:

Billing
Fox - John and I have been going through his trial paperwork and found two sheets that we had forgotten we had. Perhaps it's something you already have, but I'm unsure from your writeup. These two pages entitled, "Insurance and Research Participant Responsibility Information Sheet" spells out what the insurance/participant covers versus the trial sponsor (BMS). If you think it would be helpful to review, I've scanned it into my documents and will be happy to forward. However, you'll have to pm me your private email as I don't think we can attach to CSN messages. Just let me know.

thank you Alice
I recieved nothing like that. Also still haven't heard back from Yale since I contacted the program director.(whatever her title) I'll leave you an email. I understand the email doesn't notify us of new messages so just check your messages. Thanks again. You are wonderful. I appreciate it.

I am alive

Joe_fh said:

counter-thought
... as a different way of looking at it ...

Have you considered that in the boxing ring of politics, AHCA was never supposed to work? IMHO it is a stepping stone toward a single payer system. It's my belief that as the full weight of AHCA bears down, it is by design a means to loosen resistance to creating a single payer system.

Historically speaking, the United States is fully vested in the "Employer supplied HC System". There was no way in the political arena to make the leap from A to C without first dabbling at a mid-point.

Who knows where we go from here, I only know (or think I know) that this is not the destination.

... just saying

Just saying.....
You are probably right, Joe, in that the AHCA as it stands today is not its ultimate destination. It is what it's proponents could get passed into legislation at the time. It most certainly will evolve. But here's what I have been wondering vis a vis this discussion. Why has no one mentioned the pre existing condition clause when we are all in that boat? In this economy it is not inconceivable for any of us - or our spouses - to lose a job, or a business. Sure there's Cobra, but that only goes so long. And you need to be able to afford it. One slip in coverage and any of us are royally screwed. None of us can be cocky about this. If having cancer has taught us one thing, it is that anything can happen, at any time, with no warning. So I, for one, am grateful for this particular clause, among others, in the AHCA.

garym

Wolflvr said:

Me?
I agree with everything you said, Alice. So sorry if I seemed offended, I'm not at all. Was simply adding my experiences and feelings about the subject to the others posted. It will take much more than a conversation about healthcare and politics to offend me, lol.

TX- Thank you.

Fox- I hope things work out for you. You've been through so much and I would have interpreted the trial terms the same way you did. It seems crazy to me, but then many things do.

Great quotes...

1. In my many years I have come to a conclusion that one useless man is a shame, two is a law firm, and three or more is a congress.

-- John Adams

2. If you don't read the newspaper you are uninformed, if you do read the newspaper you are misinformed.

-- Mark Twain

3. Suppose you were an idiot. And suppose you were a member of Congress. But then I repeat myself.

-- Mark Twain

4. I contend that for a nation to try to tax itself into prosperity is like a man standing in a bucket and trying to lift himself up by the handle.

-- Winston Churchill

5. A government which robs Peter to pay Paul can always depend on the support of Paul.

-- George Bernard Shaw

6. A liberal is someone who feels a great debt to his fellow man, which debt he proposes to pay off with your money.

-- G. Gordon Liddy

7. Democracy must be something more than two wolves and a sheep voting on what to have for dinner.

-- James Bovard, Civil Libertarian (1994)

8. Foreign aid might be defined as a transfer of money from poor people in rich countries to rich people in poor countries.

-- Douglas Casey, Classmate of Bill Clinton at Georgetown University

9. Giving money and power to government is like giving bombing instructions to muslims.

-- P.J. O'Rourke, Civil Libertarian

10. Government is the great fiction, through which everybody endeavors to live at the expense of everybody else.

-- Frederic Bastiat, French economist (1801-1850)

11. Government's view of the economy could be summed up in a few short phrases: If it moves, tax it. If it keeps moving, regulate it. And if it stops moving, subsidize it.

-- Ronald Reagan (1986)

12. I don't make jokes. I just watch the government and report the facts.

-- Will Rogers

13. If you think health care is expensive now, wait until you see what it costs when it's free!

-- P.J. O'Rourke

14. In general, the art of government consists of taking as much money as possible from one

party of the citizens to give to the other.

-- Voltaire (1764)

15. Just because you do not take an interest in politics doesn't mean politics won't take an interest in you!

-- Pericles (430 B.C.)

16. No man's life, liberty, or property is safe while the legislature is in session.

-- Mark Twain (1866)

17. Talk is cheap...except when Congress does it.

-- Anonymous

18. The government is like a baby's alimentary canal, with a happy appetite at one

end and no responsibility at the other.

-- Ronald Reagan

19. The inherent vice of capitalism is the unequal sharing of the blessings. The inherent

blessing of socialism is the equal sharing of misery.

-- Winston Churchill

20. The only difference between a tax man and a taxidermist is that the taxidermist leaves the skin.

-- Mark Twain

21. The ultimate result of shielding men from the effects of folly is to fill the world with fools.

-- Herbert Spencer, English Philosopher (1820-1903)

22. There is no distinctly Native American criminal class...save Congress.

-- Mark Twain

23. What this country needs are more unemployed politicians.

-- Edward Langley, Artist (1928-1995)

24. A government big enough to give you everything you want, is strong enough to take

everything you have.

-- Thomas Jefferson

25. We hang the petty thieves and appoint the great ones to public office.

-- Aesop

 

FIVE BEST SENTENCES EVER

1. You cannot legislate the poor into prosperity, by legislating the wealth out of prosperity.

2. What one person receives without working for...another person must work for without receiving.

3. The government cannot give to anybody anything that the government does not first take

from somebody else.

4. You cannot multiply wealth by dividing it.

5. When half of the people get the idea that they do not have to work, because the other half is

going to take care of them, and when the other half gets the idea that it does no good to work,

because somebody else is going to get what they work for, that is the beginning of the end of any nation!

Texas_wedge

garym said:

Great quotes...

1. In my many years I have come to a conclusion that one useless man is a shame, two is a law firm, and three or more is a congress.

-- John Adams

2. If you don't read the newspaper you are uninformed, if you do read the newspaper you are misinformed.

-- Mark Twain

3. Suppose you were an idiot. And suppose you were a member of Congress. But then I repeat myself.

-- Mark Twain

4. I contend that for a nation to try to tax itself into prosperity is like a man standing in a bucket and trying to lift himself up by the handle.

-- Winston Churchill

5. A government which robs Peter to pay Paul can always depend on the support of Paul.

-- George Bernard Shaw

6. A liberal is someone who feels a great debt to his fellow man, which debt he proposes to pay off with your money.

-- G. Gordon Liddy

7. Democracy must be something more than two wolves and a sheep voting on what to have for dinner.

-- James Bovard, Civil Libertarian (1994)

8. Foreign aid might be defined as a transfer of money from poor people in rich countries to rich people in poor countries.

-- Douglas Casey, Classmate of Bill Clinton at Georgetown University

9. Giving money and power to government is like giving bombing instructions to muslims.

-- P.J. O'Rourke, Civil Libertarian

10. Government is the great fiction, through which everybody endeavors to live at the expense of everybody else.

-- Frederic Bastiat, French economist (1801-1850)

11. Government's view of the economy could be summed up in a few short phrases: If it moves, tax it. If it keeps moving, regulate it. And if it stops moving, subsidize it.

-- Ronald Reagan (1986)

12. I don't make jokes. I just watch the government and report the facts.

-- Will Rogers

13. If you think health care is expensive now, wait until you see what it costs when it's free!

-- P.J. O'Rourke

14. In general, the art of government consists of taking as much money as possible from one

party of the citizens to give to the other.

-- Voltaire (1764)

15. Just because you do not take an interest in politics doesn't mean politics won't take an interest in you!

-- Pericles (430 B.C.)

16. No man's life, liberty, or property is safe while the legislature is in session.

-- Mark Twain (1866)

17. Talk is cheap...except when Congress does it.

-- Anonymous

18. The government is like a baby's alimentary canal, with a happy appetite at one

end and no responsibility at the other.

-- Ronald Reagan

19. The inherent vice of capitalism is the unequal sharing of the blessings. The inherent

blessing of socialism is the equal sharing of misery.

-- Winston Churchill

20. The only difference between a tax man and a taxidermist is that the taxidermist leaves the skin.

-- Mark Twain

21. The ultimate result of shielding men from the effects of folly is to fill the world with fools.

-- Herbert Spencer, English Philosopher (1820-1903)

22. There is no distinctly Native American criminal class...save Congress.

-- Mark Twain

23. What this country needs are more unemployed politicians.

-- Edward Langley, Artist (1928-1995)

24. A government big enough to give you everything you want, is strong enough to take

everything you have.

-- Thomas Jefferson

25. We hang the petty thieves and appoint the great ones to public office.

-- Aesop

 

FIVE BEST SENTENCES EVER

1. You cannot legislate the poor into prosperity, by legislating the wealth out of prosperity.

2. What one person receives without working for...another person must work for without receiving.

3. The government cannot give to anybody anything that the government does not first take

from somebody else.

4. You cannot multiply wealth by dividing it.

5. When half of the people get the idea that they do not have to work, because the other half is

going to take care of them, and when the other half gets the idea that it does no good to work,

because somebody else is going to get what they work for, that is the beginning of the end of any nation!

Clever stuff

A lot of great lines there - unsurprisingly from Mark Twain and Winston Churchill but some real good ones attributed to Reagan as well.

There's many a true word spoken in jest but sometimes such apophthegms are more clever than true - for instance "You cannot multiply wealth by dividing it." is appealingly witty but goes against what I for one, believe in.  There are many would-be entrepreneurs who could multiply wealth for all if they had the funding to pursue their ideas into production and many wealthy despots who preside over starving populations where a fairer division would be better for all, except the lice in control.  That said, I like 19 in your list, Gary.  

It's a great comfort to see that there's no prospect of your ever running out of highly entertaining material!

todd121

foxhd said:

thank you Alice
I recieved nothing like that. Also still haven't heard back from Yale since I contacted the program director.(whatever her title) I'll leave you an email. I understand the email doesn't notify us of new messages so just check your messages. Thanks again. You are wonderful. I appreciate it.

University Research - IRB

Fox,

I don't know if this would help, but every university that has research trials has a review board that makes sure they are following all ethical guidelines in treating their patients. I believe these review boards have quite a bit of pull with all different aspects of the trials and a lot of power within the university. My daughter-in-law worked on one at a local university.

Perhaps getting in touch with the IRB (I think that's what they are generally called), and getting them involved would help straighten it out? I would claim that the university is behaving unethically in billing you for study-related expenses instead of billing them to the study.

Might get some headway with that approach?

Todd

foxhd

todd121 said:

University Research - IRB

Fox,

I don't know if this would help, but every university that has research trials has a review board that makes sure they are following all ethical guidelines in treating their patients. I believe these review boards have quite a bit of pull with all different aspects of the trials and a lot of power within the university. My daughter-in-law worked on one at a local university.

Perhaps getting in touch with the IRB (I think that's what they are generally called), and getting them involved would help straighten it out? I would claim that the university is behaving unethically in billing you for study-related expenses instead of billing them to the study.

Might get some headway with that approach?

Todd

Thanx Todd

I've been in contact with the trials review "person". Was told that I would hear back in a few days. That was several weeks ago.  I will be a bit more patient. I must have put a big effin bee in their bonnet. I don't need to stir it up.  By the way, I had to pay another bill today to the collections company that follows up. The woman has been very understanding and gives me a 20% discount. My wife thinks it should be more. I just figure that they will have to reimburse me anyway.

saintmont

Texas_wedge said:

Clever stuff

A lot of great lines there - unsurprisingly from Mark Twain and Winston Churchill but some real good ones attributed to Reagan as well.

There's many a true word spoken in jest but sometimes such apophthegms are more clever than true - for instance "You cannot multiply wealth by dividing it." is appealingly witty but goes against what I for one, believe in.  There are many would-be entrepreneurs who could multiply wealth for all if they had the funding to pursue their ideas into production and many wealthy despots who preside over starving populations where a fairer division would be better for all, except the lice in control.  That said, I like 19 in your list, Gary.  

It's a great comfort to see that there's no prospect of your ever running out of highly entertaining material!

Payment of Clinical Trials

I live in Australia, I was on the Sutent and Everolimus trial amd every thing such as mri, ct scan, bloods and doctors were payed by the drug company involved.

Now I am off the trial all ct scan,mri, bloods, drs are billed to the government. I will be going on to votrient in next couple of days and that is on our pbs scheme which means the it will cost me about $36.20 a month because the government subsides drugs. I dont have any health insurance we are very lucky in australia.

tacyarts

saintmont said:

Payment of Clinical Trials

I live in Australia, I was on the Sutent and Everolimus trial amd every thing such as mri, ct scan, bloods and doctors were payed by the drug company involved.

Now I am off the trial all ct scan,mri, bloods, drs are billed to the government. I will be going on to votrient in next couple of days and that is on our pbs scheme which means the it will cost me about $36.20 a month because the government subsides drugs. I dont have any health insurance we are very lucky in australia.

Sutent costs

I am on the sutent/ mdx trial and my co pay for is now $3500 for a month. I'm not sure what I'm going to do.

foxhd

tacyarts said:

Sutent costs

I am on the sutent/ mdx trial and my co pay for is now $3500 for a month. I'm not sure what I'm going to do.

payment

I have been sending emails to billing and the director of trials. 8 weeks ago they said they would get back to me in a couple days. Still nothing. So, my latest said," Do you recommend that I again approach higher management levels to resolve this issue?" Yep, no answer. No email It must be going on a year. Then last week, after 5:30, I get a call from the nurse who supervises the treatment trials. She tells me that they are dilligently working on this as we speak. I told her that after all my efforts to deal with the proper responsible people, they had the audacity to have an RN call me! She said you will recieve a reply by next week. Guess what? the week is over again. I thanked the nurse for her involvement but the only business between us is how I am doing. I nicely said that billing is none of her business. What have I instigated? I just don't think that anyone is listening. I am not saying that I don't want to pay. And I am current with thousands of dollars of payment. I keep trying to tell them that according to the protocol they gave me and had me sign, it says, "At NO cost to you or your insurance for ALL protocol related procedures." The protocol specifically states I will have biopsies, scans, blood work, and treatments as THEY determine.  So, all I am telling them is to send the bills to Bristol Meyer Squibbs per contract that they made me sign and abide by. Has this never been questioned? Have they been so lazy that this problem is years deep in improper billing? Are they in deep crap with correcting everything? I haven't been more aggressive because I really like everyone involved in my care,  and Yale New Haven hospital. I don't want to jeopardize my care. Maybe it's time to invovle someone in contract law to look into this.

Tacyarts, I don't know what I would do in your situation either. I hope we all get through this. It just wouldn't be right to make our families go broke and then we die anyway.

DonMiller

foxhd said:

payment

I have been sending emails to billing and the director of trials. 8 weeks ago they said they would get back to me in a couple days. Still nothing. So, my latest said," Do you recommend that I again approach higher management levels to resolve this issue?" Yep, no answer. No email It must be going on a year. Then last week, after 5:30, I get a call from the nurse who supervises the treatment trials. She tells me that they are dilligently working on this as we speak. I told her that after all my efforts to deal with the proper responsible people, they had the audacity to have an RN call me! She said you will recieve a reply by next week. Guess what? the week is over again. I thanked the nurse for her involvement but the only business between us is how I am doing. I nicely said that billing is none of her business. What have I instigated? I just don't think that anyone is listening. I am not saying that I don't want to pay. And I am current with thousands of dollars of payment. I keep trying to tell them that according to the protocol they gave me and had me sign, it says, "At NO cost to you or your insurance for ALL protocol related procedures." The protocol specifically states I will have biopsies, scans, blood work, and treatments as THEY determine.  So, all I am telling them is to send the bills to Bristol Meyer Squibbs per contract that they made me sign and abide by. Has this never been questioned? Have they been so lazy that this problem is years deep in improper billing? Are they in deep crap with correcting everything? I haven't been more aggressive because I really like everyone involved in my care,  and Yale New Haven hospital. I don't want to jeopardize my care. Maybe it's time to invovle someone in contract law to look into this.

Tacyarts, I don't know what I would do in your situation either. I hope we all get through this. It just wouldn't be right to make our families go broke and then we die anyway.

Payment

Hey.  I joined up the other day.  I had my surgery on October 5^th. 11CM pT3a   grade 3 with sinus fat and vascular involvement as an added bonus.  Didn’t have a sick day in 30 years. No symptoms or anything. Sounds like most of you guys.

I am a lawyer in New Jersey but I am of no help unless you want to buy a business or get divorced.  I do think should consider being as proactive on the legal front as you are on getting treatment.  Not all lawyers are ****.  As of basic rule of law, all contracts are construed against the people who drafted them.  I have been sometimes able to resolve problems for people just by writing a strong balanced demand letter.  The medical people are not involved in billing so it never affects their attitude towards you at all.

There are often contractual provisions which limit the time you have to formally contest these issues. You don’t want to miss a deadline.  Like you, I am really worried about spending every penny and then some and then dying anyway.    

foxhd

DonMiller said:

Payment

Hey.  I joined up the other day.  I had my surgery on October 5^th. 11CM pT3a   grade 3 with sinus fat and vascular involvement as an added bonus.  Didn’t have a sick day in 30 years. No symptoms or anything. Sounds like most of you guys.

I am a lawyer in New Jersey but I am of no help unless you want to buy a business or get divorced.  I do think should consider being as proactive on the legal front as you are on getting treatment.  Not all lawyers are ****.  As of basic rule of law, all contracts are construed against the people who drafted them.  I have been sometimes able to resolve problems for people just by writing a strong balanced demand letter.  The medical people are not involved in billing so it never affects their attitude towards you at all.

There are often contractual provisions which limit the time you have to formally contest these issues. You don’t want to miss a deadline.  Like you, I am really worried about spending every penny and then some and then dying anyway.    

Thanks DonMiller

Thanks for the advice. It is my point exactly. It's their contract. That's all. And yes the care givers aren't involved in the business end so they treat me great.

alice124

billing

It's hard to believe they still haven't attempted to rectify this. Perhaps its because they have no motivation to do so. I'm not the lawyer of the family, but it seems to me that if you write a letter to the administrators and BMS with a copy to your credit bureau saying that "since your inquiries continue to fall on deaf ears,  any future payments will be placed into escrow until the billing inconsistencies are resolved",  maybe it will get their attention.

This thought just came to me reading your post. John isn't home right now but I'll run it by him when he returns. I'm not sure a letter from an out-of-state lawyer would carry any weight, but I'm sure--if you think it would--John could help you out.

 

 

foxhd

alice124 said:

billing

It's hard to believe they still haven't attempted to rectify this. Perhaps its because they have no motivation to do so. I'm not the lawyer of the family, but it seems to me that if you write a letter to the administrators and BMS with a copy to your credit bureau saying that "since your inquiries continue to fall on deaf ears,  any future payments will be placed into escrow until the billing inconsistencies are resolved",  maybe it will get their attention.

This thought just came to me reading your post. John isn't home right now but I'll run it by him when he returns. I'm not sure a letter from an out-of-state lawyer would carry any weight, but I'm sure--if you think it would--John could help you out.

 

 

thanks Alice

Escrow is a good idea. At this point I don't want to make this a legal issue because I think something will be straightened out. Sometimes I am still naive. I have several lawyer friends who I will be able to approach if needed. I can still afford to pay my bills and it shows good intent on my part. I think the inaccurate billing system has just been exposed and they are trying to cover their a**es before action. Thanks Alice. I've been missing you. Try to enjoy your retirement.